Fundraiser for Staten Island boy brings in $100K

Among the adults who attended the Michael's Cause fundraiser were, from the left, Alyssa Depaolis, Miss Richmond County 2013; Greg Breinberg, director of the PS 22 Chorus with some of his students; Theresa Capolongo; Brielle Von Hugel, an "American Idol" finalist in 2011, and Robert Capolongo.
Photo Courtesy of Joe Larusso

ANNADALE - The Hilton Garden Inn was home to a night of hope two weeks ago, with about 500 people packing the Bloomfield hotel's ballroom to raise money to boost awareness of a little-known disease.

Theresa and Robert Capolongo, the Annadale parents of 6-year-old Michael who lives with Duchenne muscular dystrophy, hosted a fundraising dinner-dance titled "Wish Upon a Star" on March 22 through Michael's Cause, a non-profit organization dedicated to finding a cure for the disease.

The effort was highly successful; they raised more than $100,000.

Duchenne muscular dystrophy is the leading fatal genetic childhood disease worldwide. It affects one in every 3,500 infant males. The culprit is an absence of dystrophin, a protein that strengthens muscle fibers and protects them from injuries. The progressive neuromuscular disorder results in degeneration of all voluntary muscles, leading to paralysis and untimely death.

Robert is a sergeant with the city's Police Department and Theresa is a registered nurse in the neonatal intensive care unit (NICU) at Staten Island University Hospital.

Michael Capolongo, 6, of Annadale, lives with Duchenne muscular dystrophy, which affects one in every 3,500 infant males worldwide. The culprit is an absence of dystrophin, a protein that strengthens muscle fibers and protects them from injuries. The progressive neuromuscular disorder results in degeneration of all voluntary muscles, leading to paralysis and untimely death.

Michael was diagnosed in November 2010, and a year later, the Capolongos founded Michael's Cause, with the mission of promoting life-saving research into Duchenne muscular dystrophy.

In less than two years, the Annadale parents have won over the support of hundreds of people. Their annual fundraiser was a runaway success for the second straight year.

"We're trying to save our boy and other boys affected with the disease," said Robert. "I think the people here want to get behind such a thing. It makes us feel a lot better, for sure."

"It helps give us a feeling of purpose, that we are doing something," added his wife.

At first, the couple sat back and cried, she said, but they quickly went into action.

"We got to act on it, and we did," said Theresa. "We're able to get money directly to where it has to go, to researchers, doctors and scientists getting these drugs to clinical trials. Every dollar we raise goes directly where it has to go."

Among the approximately 500 people in attendance were neighbors, friends, family members, and strangers willing to help.

George Clark of Great Kills, a fraternity brother of Robert's, said it's good to see people rallying for the cause.

"If it leads to a possible cure down the line, it's great," said Clark, noting it's important to raise awareness. "You have to kickstart it somewhere."

Longtime friends Stephanie and Fank Bortle, of Brooklyn, said any time a person can help a friend in need is important.

"It's amazing what the outpouring of support is here. It's fantastic," said Bortle.

Neighbors Gina and Rich Runfola called the charity an amazing, but bittersweet, event because of the circumstances. They credited the Capolongos for being able to build a wide range of support quickly.

"They got everything organized, people together for the fundraiser, money donated," said Runfola.

Special guests of the evening included the Hamad family, who lost three boys to the disease. Their story was one of inspiration and courage as Eddie Hamad spoke to those in attendance. He went on to say how important funding is to help researchers find a cure.

Brielle Von Hugel, along with the PS 22 Chorus, sang "You'll be in My Heart" and "My Wish."

Dr. Kathryn Wagner, of the Kennedy Krieger Institute, spoke about the future of Duchenne and the importance of raising funds for research. Michael's Cause presented Dr. Wagner with a $15,000 check to help fund the Hugo W. Moser Research Laboratory at the Institute.